On June 27, 2017, my son Alec was found dead, alone in his Minneapolis apartment. It shouldn't have happened.

Alec had Type 1 diabetes, a serious condition that is manageable with access to insulin and proper supplies. But Alec turned 26 years old on May 20 of last year, which meant that his coverage under my health insurance policy ended a few days later. Alec had a full-time, steady job. But, like a lot of US workers, he did not have good health insurance offered through his employer.

For Alec and others with diabetes, this presents a deadly situation. Many people with type 2 diabetes need regular access to insulin to live; all persons with Type 1 do. Insulin is a 95-year-old drug whose discoverers sold their patents for $1 each, but its price has increased over 1,000 percent since the late 1990s. A vial of the same insulin that was once sold for around $25 can now cost patients like Alec nearly $300, and many people need multiple vials per month to survive.

For Alec, this meant that his insulin and supplies cost almost $1,300 a month. He and I together researched for months in advance about his health insurance options. They weren't good. The best plan we found would cost him $450 a month for the premium with a whopping $7,600 deductible. That deductible meant he would be paying out-of-pocket for his medicine for many months anyway, so he decided to go without the plan until he could find a different job with benefits.

Endocrinologists here in the US report that as many as one in five of their patients are not able to afford their insulin. For many persons with diabetes, that means they land in the emergency room with diabetic ketoacidosis. For others, like Alec, they never get there. Just 27 days after his coverage under my insurance ended, I received the call no parent ever wants to get.

Second: see the tweet at the head of this posting, which tells another story.

Put these two stories — they came out within days of each other — side by side, and what do they say about the United States at this moment in time? What kind of nation permits people to die of a treatable illness like diabetes because it allows massive price-gouging by pharmaceutical companies to fatten the already fat salaries of top CEOs, while hedge fund managers rake in an increased $10,000 more per week under the very same economic system that is leading to hugely increased price-gouging?

I think of all the rhetoric I hear floating around in right-wing Christian circles about how God is going to judge America for its sinfulness. How does that rhetorical frame not see glaring sins like these in our culture, as the people offering us this rhetorical frame bless political leaders who have chosen this situation, created this situation, for all of us? While touting themselves as "pro-life" Christians . . . .

Nicole Smith-Holt's report hits home for me because I am diabetic. I have type 2 adult-onset diabetes. Fortunately, my blood sugars are well-controlled and I do not need insulin.

I have been enrolled for a year or so now in a diabetes care-management program through the insurance plan I'm fortunate to have through my spouse's plan. When I went to my pharmacist a few weeks ago to get a new supply of test strips for my glucometer — they are provided for me by the care-management plan — the pharmacist told me the test strips aren't covered any longer. He thought I had somehow been cancelled out of the care-management plan at the start of 2018. He encouraged me to contact my insurance company.

I called the insurance folks, and spent three hours on the phone, being shunted back and forth between this office and that office, receiving conflicting information and instructions from each office. By the end of three hours, the problem had not been resolved.

I solicited the help of my doctor, who got one of his nurses involved in placing calls to try to sort the problem out. She spent hours doing that. I spent additional hours on the phone.

I finally figured out that the problem was that the company producing the test strips nearly doubled their price last year, and the pharmaceutical mavens connected to my insurance plan were no longer willing to cover the cost of those test strips because of the huge rise in their price. It costs practically nothing to manufacture these strips. There is no ongoing research to be subvented by doubling the price of the strips.

This is price-gouging pure and simple, and it's being stepped up now as a direct result of the kind of government many Americans chose for us in 2016. It's a direct result of relaxed controls on what pharmaceutical companies can do under the current federal administration. The name of the game is how much pharmaceutical companies can gouge patients and consumers and get away with the price-gouging. Many Americans — including many that need health care and diabetes management, in particular — voted for this to be done to themselves.

I went to a meeting of one of the committees on which I volunteer last week and recounted this story to the woman who chairs the committee. Her husband is diabetic. He's in the same care-management program I'm in, covered by the same insurance.

She told me that, since the start of 2018, she and he have had to deal with the very same runaround and time-consuming phone calls I have had to deal with about my test strips. But in his case, it's his insulin that the program suddenly stopped providing — expensive insulin that he cannot do without as a severe diabetic.

She's furious about all of this. I am, too. And I think that if God is in the judging and punishing business, as right-wing Christians imagine "He" is, "He" has a lot to judge and punish in a nation that alllows the two stories told above to coexist side by side.

"We need, in every community, a group of angelic troublemakers." Bayard Rustin, Quaker gay activist

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About Me

I'm a theologian who writes about the interplay of belief and culture. My husband Steve (also a theologian) and I are now in our 47th year together. Though the church has discarded us (and here, here, here, and here) because we insist on being truthful about our shared life, we continue to celebrate the amazing grace we find in our journey together and love for each other.
We live in hope; we remain on pilgrimage....
A note about my educational background: I have a Ph.D. and M.A. in theology from Univ. of St. Michael's College, Toronto School of Theology; an M.A. in English from Tulane Univ.; and a B.A. in English from Loyola, New Orleans.